The Complex Matter of Requesting Support—Experiences of Persons with Intellectual Disability

Round 1

Reviewer 1 Report

Comments and Suggestions for Authors

Abstract

The abstract lines 13/14 indicate a focus on the legal right to support, in the form of housing.  However, this argument pertaining to a legal right to support in the form of housing appears to get lost throughout the remainder of the paper.  Should the introduction stipulate that a person has the right to access support to make decisions  relevant to their needs and wishes and to exercise their legal rights irrelevant of their mental capacity.

Lines 19-22 indicate Content analysis yielded one overarching theme: “Requesting support may be a complex matter for persons with intellectual disability” and three specific themes: “Being in control of support is important to achieve autonomy”, “Support is embedded in social interaction” and “Ensuring good relationships with support persons is a balancing act”.

How are the specific themes linked to the overarching theme eg. Does this mean that there is one overarching theme and three subthemes?  The overarching theme: “Requesting support may be a complex matter for persons with intellectual disability” is very wordy – would the authors consider something like: “Complexities in requesting support” – using the word ‘may’ indicates weakness in findings e.g. was it in the findings or was it not in the findings?  If you consider using the suggested theme title or something similar, then you could critically discuss within the theme e.g positive instances and negative instances.

Lines 23/24 see previous feedback on the use of ‘may’ 

Introduction

Lines 29-30 state ‘ ‘Both scientific and government reports indicate that it may be difficult for persons with intellectual disability (ID) [1] in Sweden to obtain support in line with their own wishes [2-6]. Elaborate by providing more explicit information eg. In what areas have persons with intellectual disability found it difficult to obtain support.

Lines 55-56 indicate that under the United Nations Convention on the Rights of Persons with Disabilities 55 (CRPD) [12], persons with ID have the right to be listened to and to take part in society, 56 but research shows that persons with ID have difficulties to live the lives they want [2-6].  If the authors intend on developing the argument for housing I recommend referring to specific articles within the UN Convention.  Recommend Reading:  Carey, E., & Ryan, R. (2019). Chapter 14 Informed Consent. In Handbook of Intellectual Disabilities Integrating Theory, Research, and Practice Springer. https://doi.org/10.1007/978-3-030-20843-1_14

Elaborate on how the UNCRPD is interpreted and applied in your own country and how the application of the UNCRPD impacts support for people with intellectual disabilities Are focusing on ‘support’ are there specific articles within the UN Convention?

Lines 64-65 The support should be designed based on each person’s own needs [17]. It 64 may include support in everyday life in the person’s home, employment at a daily activity centre and accompaniment to activities outside the home.

Recommend reviewing the literature on supported decision making models and integrate -Carey and Ryan 2019 people with intellectual disability

Participants:

Lines 61-63 previously indicated in Sweden, people with ID are entitled to support enabling them to “live like others”, as laid down in Section 5 of the Act on Support and Services for Persons with Disabilities (“LSS”) [16]. Lines 96-97 indicate that participants lived either in a group home or a flat and received some support under LSS.  Can you provide specific information about the type and level of support received and for what decisions.

 

Ethical Considerations:

Lines 103-111

Recruitment and Informed consent.

Did the participants have options for help/support to make a decision about being involved in the research and for help/support during the research study?  Was a gatekeeper enlisted. Did each participant get a copy/ format of the informed consent form in a format which was accessible to meet individual need?  If a participant wished to opt out of the study, who did they approach and how?  Explain procedures enlisted to ensure ongoing consent for the duration of the study – Was a separate information session provided to the participants about what the second interview would entail?

Data collection:

Did the participants have help/support to engage in the online interviews?

In the second interview, the “Talking Mats” were used.  Did the participants have prior knowledge or introduction to the use of ‘Talking Mats’? Was information sought to see if there were other strategies which individuals used to compliment their communication? Did they have the option of supporting persons during the second interview/use of talking mats?

Data analysis:

Can the authors account for researcher reflexivity

 

Results:

Please provide more information in this section on participant characteristics.  Was data collected regarding the identified formalised/informal level of/persons of support in existence for the person.

Lines 171-176 The analysis shows that it is a challenge for persons with ID to obtain the support they need in the way they want. This is apparent from all three specific themes identified “Being in control of support is important to achieve autonomy”, “Support is embedded in social interaction” and “Ensuring good relationships with support persons is a balancing act” – as well as from the overarching theme: “Requesting support may be a complex matter for persons with intellectual disability”.

 

How are the specific themes linked to the overarching theme eg. Does this mean that there is one overarching theme and three subthemes?  If so should the overarching theme be introduced first then the others?

 

Overall feedback on theme/subthemes.

In light of previous feedback consider theme revision.  Throughout the subthemes remove ‘may’ and replace it with specific findings from specific samples, and compare and contrast findings to make your argument around the theme. Introduce the theme first accompany the associated quote, and ensure linkage between arguments associated with quotes within each theme.  Do not finish on a quote.  Draw conclusions and interpretations at the end of each subtheme.  The following are some examples.

 

3.1

Lines 180-182 The participants’ descriptions of what influences the support they receive and how they feel about that support make it clear that obtaining individually appropriate support is a complex matter.

The above statement is a very definitive statement, however it is contradictory to the ‘maybe’ presented in the abstract and introduction.  See previous feedback.

3.2 Specific theme: Being in control of support is important to achieve autonomy

Subtheme 3.2.1

Hence being autonomous is of great importance to the participants. Recommend to elaborate on the conclusion of the theme.  What does independence mean to the participants and how does this meaning relate to being autonomous?

3.2.2 Sub-theme: One can be autonomous in requesting help

Lines 215-2-7 – Present specific findings providing examples, then draw conclusions and interpretations of these findings.  Recommend to rephrase this removing the word ‘may’

Taking into consideration how this themes is introduced in lines 215-217 - Did the participant at any time verbally communicate to the taxi driver that he did not wish the taxi driver to accompany him?

Lines 232-236 – can you relate this argument back to the presentation of findings in  lines 215-217?

3.2.3. Sub-theme: Asking for help may be troublesome Line 240 – recommend to change ‘may’ to ‘can’

3.2.4. Sub-theme: Receiving help may be comforting

3.2.5. Sub-theme: Continuous development in requesting and accepting help lines 284-287 Participants report that they may feel squeezed in between the discomfort of not being able to do something and the discomfort of asking for help. This may cause them to challenge their concerns, causing them either to ask for help or learn to manage on their own:

Remove ‘may’ and replace with  specific findings from specific samples, compare and contrast findings  to make your argument around the theme. 

3.3.1 Sub-theme: Helping each other 333-335

Doing things together with staff, workmates or friends was described as very important. It was essential that the support person should not do things for the person with ID, but that they should do things together.

 

Be careful of conflicting arguments – previously it has been stated that having a mother make a sandwich is considered acceptable. The decision to make a sandwich is distinctly different from a decision to pay bills.  Can you consider the level of support required to make some decisions? 

3.4.2. Sub-theme: Easier to ask family members

3.4.3. Sub-theme: Trusting the person providing help is key to obtaining the help one wants 462-464

The participants’ choice of whom to ask for help was strongly influenced by trust in potential support persons, whether family members or staff. Conflicting as in ‘trust’ and ‘potential’ support persons…..

Discussion line 512

Once the themes are revised consider revising the discussion.  The discussion begins with ‘This study has presented new knowledge about how persons with ID view their part in the dyad of support taker and support person.  While the core focus of the paper is on the theory around ‘relational autonomy’ current policy on the application of the UNCRPD (2006) legislation in your country needs to be addressed and state what formal/informal structures are in place to support the person.  Doing this in the introduction/background will enhance the opportunity for discussion in this section. 

Comments on the Quality of English Language

Please undertake proofread checking for syntax, sentence structure and paragraph formations

Author Response

Point to point list with responses to Reviewer 1

 

Can be improved

Must be improved

Not applicable

Abstract

1. The abstract lines 13/14 indicate a focus on the legal right to support, in the form of housing.  However, this argument pertaining to a legal right to support in the form of housing appears to get lost throughout the remainder of the paper.  Should the introduction stipulate that a person has the right to access support to make decisions  relevant to their needs and wishes and to exercise their legal rights irrelevant of their mental capacity.

Response: Thank you for your important comment. We have clarified the meaning to emphasize support in everyday life., i.e. support received both at home and at work. “In Sweden, persons with intellectual disability (ID) have a legal right to support in everyday life,, including housing with support and participation in daily activities,”

 

2. Lines 19-22 indicate Content analysis yielded one overarching theme: “Requesting support may be a complex matter for persons with intellectual disability” and three specific themes: “Being in control of support is important to achieve autonomy”, “Support is embedded in social interaction” and “Ensuring good relationships with support persons is a balancing act”.

How are the specific themes linked to the overarching theme eg. Does this mean that there is one overarching theme and three subthemes?  The overarching theme: “Requesting support may be a complex matter for persons with intellectual disability” is very wordy – would the authors consider something like: “Complexities in requesting support” – using the word ‘may’ indicates weakness in findings e.g. was it in the findings or was it not in the findings?  If you consider using the suggested theme title or something similar, then you could critically discuss within the theme e.g positive instances and negative instances.

Response: Based on comments on our results, we have conducted a further analysis of the results, which means that the result themes have been reformulated and now consist of one overarching theme and three sub-themes. I hope this will clarify the entire results section.

3. Lines 23/24 see previous feedback on the use of ‘may’ 

Response: Changed may to can through the text

Introduction

4. Lines 29-30 state ‘ ‘Both scientific and government reports indicate that it may be difficult for persons with intellectual disability (ID) [1] in Sweden to obtain support in line with their own wishes [2-6]. Elaborate by providing more explicit information eg. In what areas have persons with intellectual disability found it difficult to obtain support.

Response: Thank you for your valuable comment. We have clarified this in the introduction and hope it is now clearer in which areas and in what ways support has been insufficient.

5. Lines 55-56 indicate that under the United Nations Convention on the Rights of Persons with Disabilities 55 (CRPD) [12], persons with ID have the right to be listened to and to take part in society, 56 but research shows that persons with ID have difficulties to live the lives they want [2-6].  If the authors intend on developing the argument for housing I recommend referring to specific articles within the UN Convention.  Recommend Reading:  Carey, E., & Ryan, R. (2019). Chapter 14 Informed Consent. In Handbook of Intellectual Disabilities Integrating Theory, Research, and Practice Springer. https://doi.org/10.1007/978-3-030-20843-1_14

Elaborate on how the UNCRPD is interpreted and applied in your own country and how the application of the UNCRPD impacts support for people with intellectual disabilities Are focusing on ‘support’ are there specific articles within the UN Convention?

Response: At the beginning of the introduction (line 31-36), we described how the UNCRPD has influenced Swedish disability policy.

 

6. Lines 64-65 The support should be designed based on each person’s own needs [17]. It 64 may include support in everyday life in the person’s home, employment at a daily activity centre and accompaniment to activities outside the home.

Recommend reviewing the literature on supported decision making models and integrate -Carey and Ryan 2019 people with intellectual disability

Response: Thank you for the valuable information. We have referred to supported decision-making in the introduction, but have decided not to describe it in detail, as the focus of this study is on the individuals' own experiences of support in everyday life. Part of this may, of course, be support in making their own decisions.

Participants:

7. Lines 61-63 previously indicated in Sweden, people with ID are entitled to support enabling them to “live like others”, as laid down in Section 5 of the Act on Support and Services for Persons with Disabilities (“LSS”) [16]. Lines 96-97 indicate that participants lived either in a group home or a flat and received some support under LSS.  Can you provide specific information about the type and level of support received and for what decisions.

Response: The support that individuals receive is always assessed by social workers in the municipality. People living in group homes often have greater needs for support and staff within their homes, while those living in flats meet staff either in their flats or in the common areas nearby.

Ethical Considerations:

8. Lines 103-111

Recruitment and Informed consent.

Did the participants have options for help/support to make a decision about being involved in the research and for help/support during the research study?  Was a gatekeeper enlisted. Did each participant get a copy/ format of the informed consent form in a format which was accessible to meet individual need?  If a participant wished to opt out of the study, who did they approach and how?  Explain procedures enlisted to ensure ongoing consent for the duration of the study – Was a separate information session provided to the participants about what the second interview would entail?

Response: The staff at the daily activities centre were informed about the study and were responsible for disseminating the information to the individuals with ID. All information was illustrated, including the informed consent form. All participation was voluntary and participants were informed that they could withdraw at any time without giving a reason. At the beginning of the second interview, participants were informed about how the interview would be conducted; see the response regarding Talking Mats.

We also had information about the study in a PowerPoint presentation, which included images and recorded information about the study and the interviews.Data collection:

9. Did the participants have help/support to engage in the online interviews?

Response: Information about the possibility of having a support person present during the interviews was already included in the initial information about the study. One participant chose to have staff present during the interviews. This has been clarified in  Method under Recruitment of participants.

 Information about the possibility to have a person

10. In the second interview, the “Talking Mats” were used.  Did the participants have prior knowledge or introduction to the use of ‘Talking Mats’? Was information sought to see if there were other strategies which individuals used to compliment their communication? Did they have the option of supporting persons during the second interview/use of talking mats?

 Response: Thank you for the important comment The Talking Mats methodology was followed according to all recommendations, with a thorough review of topics, topscale and options. During the interview, the interviewer ensured that the person understood the questions and that the interviewer understood the person's answers. It is also in the nature of the Talking Mats to double-check the answers. We were in the study open to all types of communication, such as body language and signs, and participants were welcome to use their own AAC strategies, which none of the participants did.

We have clarified the use of Talking mats in the Data Collection

The second interview was based on what had emerged during the first interview and was conducted using Talking Mats to further explore the areas raised in the first interview. Talking Mats is a structured visual communication framework designed to help people with communication difficulties express their feelings and opinions

and in the discussion part of the Strengths and limitations

The first interview was semi-structured and provided the opportunity to elicit a wide range of experiences and reflections on the support people receive in their daily lives. The decision to include the Talking Mats methodology in the second round of interviews was made to deepen the narratives around what was covered in the first interview.

Data analysis:

11. Can the authors account for researcher reflexivity

Response: We have described the research team in Method

2.4 Research team

The research team comprised three experienced researchers, all with experience in qualitative research. They have backgrounds in occupational therapy and extensive clinical experience in rehabilitating children, adolescents, and adults with lifelong disabilities, such as intellectual disabilities, both professionally and as relatives. One of the researchers, MB, is a licensed trainer in the Talking Mats method and has extensive experience using Talking Mats in clinical settings and research. The first (AÖ) and last (AS) authors had foundation training and are certified in Talking Mats methodology. All of the authors are female.

 

Results:

12. Please provide more information in this section on participant characteristics.  Was data collected regarding the identified formalised/informal level of/persons of support in existence for the person.

Response: We have included more information about the participants both under Method Recruitment of participants and at the beginning of the results. Sweden is a small country and, as the identity of the participants must not be disclosed, we have chosen not to include a table describing each person.

 

13. Lines 171-176 The analysis shows that it is a challenge for persons with ID to obtain the support they need in the way they want. This is apparent from all three specific themes identified “Being in control of support is important to achieve autonomy”, “Support is embedded in social interaction” and “Ensuring good relationships with support persons is a balancing act” – as well as from the overarching theme: “Requesting support may be a complex matter for persons with intellectual disability”.
14. How are the specific themes linked to the overarching theme eg. Does this mean that there is one overarching theme and three subthemes?  If so should the overarching theme be introduced first then the others?

Overall feedback on theme/subthemes.

15. In light of previous feedback consider theme revision.  Throughout the subthemes remove ‘may’ and replace it with specific findings from specific samples, and compare and contrast findings to make your argument around the theme. Introduce the theme first accompany the associated quote, and ensure linkage between arguments associated with quotes within each theme.  Do not finish on a quote.  Draw conclusions and interpretations at the end of each subtheme.  The following are some examples.

3.1

Lines 180-182 The participants’ descriptions of what influences the support they receive and how they feel about that support make it clear that obtaining individually appropriate support is a complex matter.

The above statement is a very definitive statement, however it is contradictory to the ‘maybe’ presented in the abstract and introduction.  See previous feedback.

3.2 Specific theme: Being in control of support is important to achieve autonomy

Subtheme 3.2.1

Hence being autonomous is of great importance to the participants. Recommend to elaborate on the conclusion of the theme.  What does independence mean to the participants and how does this meaning relate to being autonomous?

3.2.2 Sub-theme: One can be autonomous in requesting help

Lines 215-2-7 – Present specific findings providing examples, then draw conclusions and interpretations of these findings.  Recommend to rephrase this removing the word ‘may’

Taking into consideration how this themes is introduced in lines 215-217 - Did the participant at any time verbally communicate to the taxi driver that he did not wish the taxi driver to accompany him?

Lines 232-236 – can you relate this argument back to the presentation of findings in  lines 215-217?

3.2.3. Sub-theme: Asking for help may be troublesome Line 240 – recommend to change ‘may’ to ‘can’

3.2.4. Sub-theme: Receiving help may be comforting

3.2.5. Sub-theme: Continuous development in requesting and accepting help lines 284-287 Participants report that they may feel squeezed in between the discomfort of not being able to do something and the discomfort of asking for help. This may cause them to challenge their concerns, causing them either to ask for help or learn to manage on their own:

Remove ‘may’ and replace with  specific findings from specific samples, compare and contrast findings  to make your argument around the theme. 

3.3.1 Sub-theme: Helping each other 333-335

Doing things together with staff, workmates or friends was described as very important. It was essential that the support person should not do things for the person with ID, but that they should do things together.

 

Be careful of conflicting arguments – previously it has been stated that having a mother make a sandwich is considered acceptable. The decision to make a sandwich is distinctly different from a decision to pay bills.  Can you consider the level of support required to make some decisions? 

3.4.2. Sub-theme: Easier to ask family members

3.4.3. Sub-theme: Trusting the person providing help is key to obtaining the help one wants 462-464

The participants’ choice of whom to ask for help was strongly influenced by trust in potential support persons, whether family members or staff. Conflicting as in ‘trust’ and ‘potential’ support persons…..

 

Response to comments on results: Thank you for your valuable comments on our findings. Based on your comments, we have conducted a further analysis of the results, which means that the results themes have been revised and now consist of one overarching theme and three themes. All changes are highlighted in yellow in the results section. We hope this will improve readability and make the results clearer.

 

16 Discussion line 

Once the themes are revised consider revising the discussion.  The discussion begins with ‘This study has presented new knowledge about how persons with ID view their part in the dyad of support taker and support person.  While the core focus of the paper is on the theory around ‘relational autonomy’ current policy on the application of the UNCRPD (2006) legislation in your country needs to be addressed and state what formal/informal structures are in place to support the person.  Doing this in the introduction/background will enhance the opportunity for discussion in this section. 

Response about the discussion: We have revised the discussion in accordance with our revised results. Rational autonomy is no longer included in the introduction. The role of the UNCRPD in Swedish disability policy is briefly described in the introduction.

17. Comments on the Quality of English Language

Please undertake proofread checking for syntax, sentence structure and paragraph formations

Response: The original manuscript was proofread by a certified proofreader before its initial submission. The revised sections have also been proofread, and we hope this has improved the quality of the English.

Reviewer 2 Report

Comments and Suggestions for Authors

The complex matter of requesting support – Experiences of 2 persons with intellectual disability

 

Thank you for the opportunity to review the article: The complex matter of requesting support – Experiences of 2 persons with intellectual disability.

Nice and informative abstract.

The introduction is informative and clarifies the central terms, such as relational autonomy and autonomy. The CRPD is applied in the introduction. I suggest that the authors describe the CRPD and relevant articles in the CRPD in more depth and consider also employing the term supported decision-making, for example, article 12 in the CRPD and other literature. Supported decision-making can help the authors highlight relational autonomy and the importance of the supportive structure to enhance and support the autonomy of persons with intellectual disabilities. Look also at the article by Petra Bjorne, which elaborates on "live like others" and supports the thought of supportive structures as an important premise for exercising autonomy. More precisely, if the supported decision-making is considered irrelevant, the importance of autonomy and relational autonomy should be argued for more. The study's introduction may benefit from a review of the existing literature. Consider a research question/s before the methodology.

 

Methods

I would welcome more information about the informants. Were all the informants doing the interviews alone, or could they have had a supporting person with them?

Ethical considerations—were there any issues you had to consider before or during interviews? Did you have a follow-up plan in case of questions, etc.? Or in case sensitive topics were discussed during the interview, for example, lack of access to support, etc.?

Why were the "talking mats" presented during the second rather than the first interview? Consider including some reflection on that. The reader should get more information about the talking mats and the decision to apply those in the research. Does the introduction of the talking mats have something to do with the first interview round? Was it a methodological choice, and did the talking mats in the second round of interviews build on the experiences from the first round?

 

Analysis

A more in-depth description of the analysis could benefit the article. How did you discuss it back and forth? How did the two authors cooperate and identify the meaning units together? Did each of the two code the material for themselves and then discussed or was it a collaborative process? I suggest describing more analytical, theoretical approaches in the analysis. The results reflect independence but lack relational autonomy and access to support.

Results

A reintroduction of the research question might help here.

I find the first quote very interesting. It balances the difference between deciding everyday stuff like what's for dinner and rights in general—to be accepted and respected as an equal participant in society.

The first subtheme is a bit confusing since relational autonomy and access to support are the premises for independence and the article as a whole, but the relational disappears from the first subtheme.

The second subtheme reflects autonomy and independence, but the example does not reflect relational autonomy.

Subtheme 3 is more to the point of what the introduction tells us we should expect in the article. This subtheme reflects the barriers to exercising relational autonomy and autonomy itself and points to the power structures people with intellectual disabilities navigate and live within.

Subtheme 4 and the sandwich-making example are important examples of how professionals perceive the person when they ask them to make a sandwich—professionals tend to perceive the situation as the "training" situation, not as an act of empathy or as support for independence. This book can be a resource here: Niklas Altermark. (2018). Citizenship Inclusion and Intellectual Disability: Biopolitics Post-Institutionalisation. Routledge.

Subtheme 5 succeeds in relational autonomy. This applies to us all; we are all relational and successful, better with the help of others.

I suggest the authors take another look at the analysis. The article would benefit from a new round of analysis. Do the long quotes (dialogue excerpts) work well? Authors should justify the use of dialogue excerpts. The results part is long. Consider rewriting. It also brings essential knowledge about breaches of people's rights during COVID-19, for example, so it is important to highlight different examples but consider which are the most relevant regarding relational autonomy.

Discussion

 The authors outline many important topics regarding the autonomy of people with ID. Nevertheless, the discussion could benefit from a wider range of literature. Some Scandinavian studies describe the challenges in the everyday lives of people with intellectual disabilities, such as adapting to the needs of professionals, etc. I recommend looking for literature to strengthen the discussion even more.

I think that the article might be an important contribution to the field of intellectual disability.

Author Response

Responses to reviewer 2

Must be improved

Not applicable

Comments and Suggestions for Authors

The complex matter of requesting support – Experiences of persons with intellectual disability

 

Thank you for the opportunity to review the article: The complex matter of requesting support – Experiences of 2 persons with intellectual disability.

Nice and informative abstract.

The introduction is informative and clarifies the central terms, such as relational autonomy and autonomy. The CRPD is applied in the introduction.

1. I suggest that the authors describe the CRPD and relevant articles in the CRPD in more depth and consider also employing the term supported decision-making, for example, article 12 in the CRPD and other literature.

Response: We have added information at the beginning of the Introduction stating that the UNCRPD forms the basis of Sweden's disability policy and have included Article 19 on the right to live independently and participate in society.

 

2. Supported decision-making can help the authors highlight relational autonomy and the importance of the supportive structure to enhance and support the autonomy of persons with intellectual disabilities. Look also at the article by Petra Bjorne, which elaborates on "live like others" and supports the thought of supportive structures as an important premise for exercising autonomy. More precisely, if the supported decision-making is considered irrelevant, the importance of autonomy and relational autonomy should be argued for more. The study's introduction may benefit from a review of the existing literature. Consider a research question/s before the methodology.

 Response: Thank you for your valuable comments. We have reworked the introduction and removed rational autonomy from it,but have included it in the discussion. We do not intend to include a research question. Petra Björnes artikel is included as a reference in Introduction

Methods

3. I would welcome more information about the informants. Were all the informants doing the interviews alone, or could they have had a supporting person with them?

Response: We have added more information about the participants in the section Method – Recruitment of participants. It also states that the participants were informed that they could have a support person present during the interviews, and one person chose to have a member of staff present during the interviews.

4. Ethical considerations—were there any issues you had to consider before or during interviews? Did you have a follow-up plan in case of questions, etc.? Or in case sensitive topics were discussed during the interview, for example, lack of access to support, etc.?

Response: Under ethical considerations, we have clarified that they could contact the researchers if they had any questions, and they were also encouraged to raise any questions or concerns with the staff.

 

5. Why were the "talking mats" presented during the second rather than the first interview? Consider including some reflection on that. The reader should get more information about the talking mats and the decision to apply those in the research. Does the introduction of the talking mats have something to do with the first interview round? Was it a methodological choice, and did the talking mats in the second round of interviews build on the experiences from the first round?

Response:  Thank you for the important comment The Talking Mats methodology was followed according to all recommendations, with a thorough review of topics, topscale and options. During the interview, the interviewer ensured that the person understood the questions and that the interviewer understood the person's answers. It is also in the nature of the Talking Mats to double-check the answers. We were in the study open to all types of communication, such as body language and signs, and participants were welcome to use their own AAC strategies, which none of the participants did.

We have clarified the use of Talking mats in the Data Collection

The second interview was based on what had emerged during the first interview and was conducted using Talking Mats to further explore the areas raised in the first interview. Talking Mats is a structured visual communication framework designed to help people with communication difficulties express their feelings and opinions

and in the discussion part of the Strengths and limitations

The first interview was semi-structured and provided the opportunity to elicit a wide range of experiences and reflections on the support people receive in their daily lives. The decision to include the Talking Mats methodology in the second round of interviews was made to deepen the narratives around what was covered in the first interview.

 

Analysis

6. A more in-depth description of the analysis could benefit the article. How did you discuss it back and forth? How did the two authors cooperate and identify the meaning units together? Did each of the two code the material for themselves and then discussed or was it a collaborative process? I suggest describing more analytical, theoretical approaches in the analysis. The results reflect independence but lack relational autonomy and access to support.

Response: The analysis was conducted by the first and last authors and discussed with the middle author. We identified meaningful units and condensed them separately, then discussed them. Next, we coded, categorised and identified themes. We went back and forth between the results of our analysis and the transcribed interviews.

Results

7. A reintroduction of the research question might help here.

I find the first quote very interesting. It balances the difference between deciding everyday stuff like what's for dinner and rights in general—to be accepted and respected as an equal participant in society.

The first subtheme is a bit confusing since relational autonomy and access to support are the premises for independence and the article as a whole, but the relational disappears from the first subtheme.

The second subtheme reflects autonomy and independence, but the example does not reflect relational autonomy.

Subtheme 3 is more to the point of what the introduction tells us we should expect in the article. This subtheme reflects the barriers to exercising relational autonomy and autonomy itself and points to the power structures people with intellectual disabilities navigate and live within.

Subtheme 4 and the sandwich-making example are important examples of how professionals perceive the person when they ask them to make a sandwich—professionals tend to perceive the situation as the "training" situation, not as an act of empathy or as support for independence. This book can be a resource here: Niklas Altermark. (2018). Citizenship Inclusion and Intellectual Disability: Biopolitics Post-Institutionalisation. Routledge.

Subtheme 5 succeeds in relational autonomy. This applies to us all; we are all relational and successful, better with the help of others.

I suggest the authors take another look at the analysis. The article would benefit from a new round of analysis. Do the long quotes (dialogue excerpts) work well? Authors should justify the use of dialogue excerpts. The results part is long. Consider rewriting. It also brings essential knowledge about breaches of people's rights during COVID-19, for example, so it is important to highlight different examples but consider which are the most relevant regarding relational autonomy.

Response to comments on results: Thank you for your valuable comments on our findings. Based on your comments, we have conducted a further analysis of the results, which means that the results themes have been revised and now consist of one overarching theme and three themes.

All changes are highlighted in yellow in the results section. We hope this will improve readability and make the results clearer.

Discussion

8. The authors outline many important topics regarding the autonomy of people with ID. Nevertheless, the discussion could benefit from a wider range of literature. Some Scandinavian studies describe the challenges in the everyday lives of people with intellectual disabilities, such as adapting to the needs of professionals, I recommend looking for literature to strengthen the discussion even more.

Response Thank you for your valuable comments. We have revised the discussion based on the revised results, and all changes are marked in yellow. We have referenced studies from Scandinavia in both the introduction and discussion.

 

Round 2

Reviewer 2 Report

Comments and Suggestions for Authors

Thank you for letting med review the article. The submission is well improved and balanced. 

Author Response

We have now made a minor revision in line with your valuable comments.

We have changed from the abbreviation ID to intellectual disability throughout the text.

We have also clarified the text on participants by describing that they have good communication abilities and described the extent of support in the different types of accommodation.